review

Participant assent in behavior analytic research: Considerations for participants with autism and developmental disabilities

Cody Morris Department of Psychology, Salve Regina University

Jessica J. Detrick and Stephanie M. Peterson Department of Psychology, Western Michigan University

Obtaining assent from potential research participants is an important component of research for reasons related to ethics compliance, self-determination, and choice. However, unique issues arise when working with populations who cannot assent through traditional means, such as indi- viduals with Autism Spectrum Disorder (ASD) and related developmental disabilities (DD). The purpose of this paper is to review and discuss assent practices within behavior-analytic research to identify strategies that can be used to obtain assent from potential participants with ASD and DDs. We began with a descriptive literature review of behavior-analytic articles that included the term “assent” to identify what practices behavior analysts have used to obtain assent from participants. In short, very few articles that clearly addressed assent procedures were identified. Thus, we propose a model for gaining assent when working with individuals with ASD and DDs. Key words: assent, autism, consent, developmental disabilities, ethical research

Researchers are ethically obligated to obtain permission from potential research participants when enrolling them in a study. Consent refers to a legally authorized individual providing per- mission for the individual’s participation in research (Federal Policy for the Protection of Human Subjects [FPPHS], 2018). Often, con- sent is provided by potential participants them- selves. In some cases, such as for conserved minors or adults (i.e., another individual has guardianship of the individual due to a lack of decision-making skills), the legal guardian may provide consent for that individual’s participa- tion in research. In cases where potential research participants are not able to provide con- sent, they may still need to be given the oppor- tunity to grant agreement (i.e., assent) for their

participation after their guardian has provided consent. Assent is defined as a potential research participant who is not legally authorized to pro- vide their own consent for participation affirma- tively confirming their willingness to participate in research (FPPHS, 2018). In many cases, gaining assent is a straightfor-

ward process. For example, researchers may simply ask a potential participant if they are willing to participate in a task or study. In a study involving typically developing children, this might consist of the researcher saying to the child, “I’d like you to come over here and answer some questions for me. Would you like to come and do that with me?” The child might respond, “Sure,” and walk with the researcher. This could be construed as assent to participate in research because it is an active affirmation of the child’s willingness to partici- pate. However, obtaining assent may be com- plicated with other populations, such as youth receiving services in a juvenile delinquency pro- gram, children in foster care, and individuals with Autism Spectrum Disorders (ASD) or

We have no conflict of interest to disclose. Thank you to Audrey Blematl for her assistance on this

paper. Address correspondence to: Cody Morris, Department

of Psychology, 100 Ochre Point Ave, Newport, RI 02840. E-mail: [email protected] doi: 10.1002/jaba.859

Journal of Applied Behavior Analysis 2021, 9999, 1–17 NUMBER 9999 ()

© 2021 Society for the Experimental Analysis of Behavior (SEAB).

1

developmental disabilities (DDs). Programs for juvenile delinquency and foster care are compli- cated in that the settings may create a higher likelihood of coerced assent and there may also be complexities related to consent/guardianship for those populations. The complications related to obtaining assent for individuals with ASD and DD are primarily related to barriers to their ability to provide assent. According to the Behavior Analyst Certifica-

tion Board (BACB) Certificant Data (2021), 77.67% of behavior analysts practice within the domain of ASD and intellectual and develop- mental disabilities, as opposed to .09% of the field that works within correction and delin- quency. Foster care is not currently listed as an option of professional emphasis by the BACB. Because the necessary considerations for assent are idiosyncratic across all populations, a full review of assent considerations for all populations is beyond the scope of this paper. Thus, this paper concentrates on the specific assent considerations for the largest group of research participants in behavior analytic research—individuals with ASD and DDs (Jones et al., 2020). One of the first steps to understanding assent

requirements is reviewing the applicable federal policies. The FPPHS (2018), often referred to as “Common Rule,” is the standard federal policy that outlines basic compliance requirements for all researchers working with human research par- ticipants. Within that document, expectations for assent are specified as such:

The IRB [Institutional Review Board] shall determine that adequate provisions are made for soliciting the assent of the chil- dren, when in the judgment of the IRB the children are capable of providing assent. In determining whether children are capable of assenting, the IRB shall take into account the ages, maturity, and psycho- logical state of the children involved [empha- sis added]. This judgment may be made

for all children to be involved in research under a particular protocol, or for each child, as the IRB deems appropriate. If the IRB determines that the capability of some or all of the children is so limited that they can- not reasonably be consulted [emphasis added] or that the intervention or proce- dure involved in the research holds out a prospect of direct benefit that is important to the health or well-being of the children and is available only in the context of the research, the assent of the children is not a necessary condition for proceeding with the research. Even where the IRB deter- mines that the subjects are capable of assenting, the IRB may still waive the assent requirement under circumstances in which consent may be waived. (46.408)

Given the requirements described in the FPPHS (2018), it seems apparent that the requirement to obtain assent could be waived for many potential research participants with ASD and DDs. One reason that assent requirements would be waived is that partici- pants need to be deemed capable to assent. In elaborating on what should be considered when judging an individual’s “capability,” the FPPHS specifies age, maturity, and psychologi- cal state as the primary variables. As ASD and DDs are listed as diagnoses in the Diagnostic and Statistical Manual of Mental Disorders (American Psychiatric Association, 2013), members of IRBs may be prone to dismissing or waiving the assent requirement for those populations under the psychological state preclusion. A second reason that assent might be waived

for some research participants with ASD and DDs is the age parameters stated by the FPPHS (2018). The FPPHS defines assent as “a child’s [emphasis added] affirmative agree- ment to participate in research. Mere failure to object should not, absent affirmative agree- ment, be construed as assent” (46.402). By the federal guidelines specifying children as the

Cody Morris et al.2

applicable population within the definition of assent, conserved adults would be exempt from assent requirements. Finally, a third reason that assent might be

waived for individuals with ASD and DDs is the FPPHS (2018) stipulation that participants be able to be reasonably consulted. Although the criteria for what “reasonably consulted” means are not specified, the second sentence of the definition of assent provided in the FPPHS provides at least one parameter of what may be required. The definition of assent includes the stipulation that failure to object is not sufficient for assent. In other words, assent must be an active form of affirmation. Individuals with ASD and DDs often have difficulty with speaker and listener skills. Autism Speaks (n.d.) approxi- mates that 40% of individuals with autism are “nonverbal.” Although the term nonverbal may be used inconsistently, it is reasonable to assume that the data provided for “nonverbal” individ- uals refers to individuals who, at the very least, have extreme communication difficulties. There- fore, obtaining affirmation from potential partic- ipants with ASD or DDs may be complicated or not possible through traditional written and oral modalities. In these cases, some might argue the individual cannot be reasonably consulted. To summarize, the criteria specified for

assent, as outlined in the FPPHS (2018), wai- ves the need to obtain assent for many poten- tial research participants with ASD and DDs. Specifically, assent could be waived for poten- tial research participants with ASD or DD who are: 1) deemed incapable to assent by an IRB due to their diagnosis, 2) are conserved adults, or 3) are not able to be reasonably consulted due to their inability to affirm their willingness to participate in research through traditional means. However, meeting the standards of the federal guidelines is not the only consideration researchers must make when deciding whether or not to seek assent from potential research participants. For example, behavior analysts are

also obligated to follow the Ethics Code for Behavior Analysts (the Code; BACB, 2020) when engaging in professional activities, includ- ing research. The Code (BACB, 2020) specifies that researchers must seek assent from potential participants “when relevant” (p. 18). Although the relevant conditions are not described, the core principles included can be used as guid- ance when interpreting code items. The four core principles of the Code are that behavior analysts 1) work to benefit others; 2) treat others with compassion, dignity, and respect; 3) behave with integrity; and 4) ensure their competence. The first two principles—work to benefit others and treat others with compas- sion, dignity, and respect—are most pertinent to assent. Benefiting others is described as both maxi-

mizing benefits and doing no harm (BACB, 2020). One of the tenets of benefiting others is “Protecting the welfare and rights of other individuals with whom they interact in a professional capacity” (BACB, 2020, p. 4). As previously noted, the FPPHS (2018) are federal guidelines that specify the rights and protect the welfare of research participants. Therefore, in the context of research, the core ethical prin- ciple of benefiting others would seemingly defer back to the FPPHS guidelines discussed earlier as some of the relevant conditions for assent. Again, strict adherence to the FPPHS guide- lines would likely waive the requirement for assent for many potential research participants with ASD or DDs. The core ethical principle of treating others

with compassion, dignity, and respect also pro- vides important guidance related to the relevant conditions for assent. One of the tenets of this core ethical principle is “respecting and actively promoting client’s self-determination” (BACB, 2020, p. 4). Self-determination can be defined as the ability of an individual to “act as the primary causal agent in his or her life and mak- ing decisions free from external influences”

3Assent in Behavior Analytic Research

(Peterson et al., 2021, p. 3). A second tenet of treating others with compassion, dignity, and respect is “acknowledging that personal choice in service delivery is important” (BACB, 2020, p. 4). Taken together, these principles add an important layer of consideration beyond simply adherence to the basic federal guidelines protecting the welfare and rights of research participants. That is, seeking assent is consis- tent with the tenets of self-determination and choice, regardless of possible exemption as defined by federal guidelines. Seeking assent from potential research participants allows them to determine whether or not to partici- pate through the act of choice making. Specific guidelines for when and how to

emphasize self-determination and choice in working with research participants do not exist. Rather, self-determination and choice are embedded in behavior analysts’ ethical princi- ples and values and should similarly be embed- ded in the work of behavior analysts to the maximum extent possible. Deciding how self- determination and choice should be incorpo- rated into research participation via assent is a multifaceted issue. One of the largest variables involved with self-determination and choice with potential research participants harkens back to the issue of “capability.” In this case, researchers must consider how to empower potential research participants who do not have the skills to actively communicate assent through typical means (i.e., spoken or written agree- ments). The FPPHS (2018) does not provide guidance on nuanced strategies researchers can use to obtain assent because its purpose is only to provide a basic level of protection for all human research participants across all disciplines. Nuanced strategies to obtain assent in populations with limited communication skills is something that has not been fully researched and likely needs systematic evaluation across a variety of disciplines in which research is con- ducted with participants with ASD and DDs. For behavior analysts conducting research with

participants with ASD and DDs, the question is what technology exists within the science of behavior that can be used to empower potential research participants to display self-determination and choice (i.e., assent or dissent) in relation to their potential involvement in research. Our first purpose in writing this paper was

to identify possible assent technologies that could be applicable to potential research partici- pants with ASD and DDs by reviewing assent procedures used by behavior analysts broadly. The scope of our review was not limited to research that included participants with ASD and DDs. Instead, we cast a wider net in hopes of capturing any and all behavior-analytic pro- cedures used to obtain assent. We cast this wider net for two reasons discussed in the review section. The second purpose of this paper was to summarize the current state of assent technologies used broadly in behavior analysis, to identify which technologies might be applicable and useful with ASD and DD populations, and to propose adaptations and modifications to these procedures for researchers to consider when attempting to obtain assent from individuals with ASD and DD when necessary. Finally, we discuss the limitations of this review and future research that needs to take place in order to make nuanced assessments of assent possible for indi- viduals with ASD and DDs.

Review of Assent Procedures

A literature review was conducted to identify the strategies used to obtain assent in behavior- analytic research. Although individuals with ASD and DDs were our primary interest, the review was not limited to that population for two reasons. First, there is a dearth of published behavior-analytic articles specifically addressing assent, both broadly and specifically, with respect to research with individuals with ASD and DDs. The purpose of our search was to identify any and all applicable technologies for

Cody Morris et al.4

obtaining assent, regardless of the specific par- ticipant characteristics. The second reason for not limiting the search to ASD and DD partici- pants was the inconsistency in reporting demo- graphic information in many of the articles reviewed. For example, some of the reviewed articles did not report demographic information at all in their participant descriptions, whereas other articles did report demographic informa- tion but failed to connect specific assent proce- dures with specific participants. Thus, only descriptive information about assent procedures and their overall prevalence was collected. The review was conducted by searching the

journals listed on the Association for Behavior Analysis International (ABAI) and Behavior Analyst Certification Board (BACB) websites that were searchable in Google Scholar. See Table 1 for a full list of the journals that were included and excluded from the search based on their availability in Google Scholar. All of the

included journals were reviewed from the first issue to the time of the search (July 2020). We searched for the word “assent” using Google Scholar in each included journal. Each article that included the word “assent” was then reviewed and coded for several variables (described below). Articles were excluded from further review and coding if they met any of the following exclusionary criteria: (a) the arti- cle was inaccessible (i.e., no electronic copy was available), (b) the article did not describe an experiment where an independent variable was manipulated so the effect on a dependent vari- able could be observed (e.g., it was a discussion or review paper), or (c) the use of the word “assent” was not related to the primary experi- mental component of the study (i.e., assent was used to refer to something other than partici- pant agreeing to partake in the study). Figure 1 provides an overview of the search process, exclusionary criteria, and the number of journals and articles included and excluded (with reasons).

Article Categorization Each included article was then coded for the

authors’ description of the procedures used to obtain assent. The categories of methods to obtain assent were “Waived,” “No Detail,” “Minimal Detail,” or “Detailed.” Articles coded as “Waived” stated that assent was not required for at least some of the participants in their study. Articles coded as “No Detail” stated that assent was obtained but provided no further elaboration (e.g., assent was obtained for each participant). Articles coded as “Mini- mal Detail” stated that either written or verbal assent was obtained but did not specify any fur- ther details about the assent process (e.g., written assent was obtained from each participant). Lastly, articles coded as “Detailed” provided specific information describing the components of obtaining assent. For example, Slaton and Hanley (2016) stated:

Table 1

List of Journals

Journals Included in the Review Behavior Analysis in Practice Journal of Applied Behavior Analysis Journal of the Experimental Analysis of Behavior The Psychological Record The Analysis of Verbal Behavior European Journal of Behavior Analysis Journal of Behavioral Education Behavioral Interventions Perspectives on Behavior Science Behavior and Social Issues Experimental Analysis of Human Behavior Bulletin Japanese Journal of Behavior Analysis Journal of Organizational Behavior Management Mexican Journal of Behavior Analysis Monitor on Psychology Education and Treatment of Children Journals Excluded from the Review Brazilian Journal of Behavior Analysis Speech and Language Pathology and Applied Behavior Analysis Psychonomic Society Publications The Journal of Early and Intensive Behavioral Intervention

Note. This table separates the journals that were included in the review because they were searchable in Google Scholar and the journals that were excluded from the review due to not being searchable in Google Scholar.

5Assent in Behavior Analytic Research

Participant assent was gained before each session by asking each [participant] if they were ready to begin working. An affirmative response included any one of the following: head nodding, saying “yes,” saying “okay,” or coming to sit down in the designated area. A rejection response included any one of the following or a combination thereof: saying “no thanks,” shaking the head implying “no,” or using an SGD to reject participation (Molly). Mark never declined any sessions; on rare occasions Molly used her SGD to say “stop” or “all done” when asked to participate in sessions; these requests were honored. (p. 932)

Some of the reviewed articles described assent procedures that were individualized across par- ticipants. In these cases, more than one cate- gory of assent methods could have been scored for a single article because different participants received different procedures. Studies that met the criteria for more than one category of assent methods were coded under both categories. For example, the authors of one study stated that assent was obtained for participants 12 years of age and older, but not for the younger participants. In this case, the study was catego- rized as both “Waived” and “No Detail.”

The “Waived” category applied to the partici- pants under 12 years of age, and the “No Detail” category applied to participants who were 12 years of age or older. The latter group was scored as “No Detail” because the study described that assent was obtained, but no fur- ther elaboration was provided.

Interrater Agreement To assess the reliability of the application of

the exclusionary criteria, two reviewers inde- pendently applied the exclusionary criteria to 33% of the articles identified in the initial sea- rch. The initial interrater agreement for the exclusionary criteria was 89%. Every discrep- ancy was resolved until 100% agreement was obtained. The resolution process for each dis- crepancy consisted of reviewers re-reviewing and discussing the applicable article. Addition- ally, the reliability of categorization of assent procedures was also evaluated using the same process. Interrater agreement was collected for 33% of articles with an initial total agreement of 87%. Again, all discrepancies were resolved using the same process.

Results

Sixteen behavior-analytic journals were searched, with four excluded for not being searchable in Google Scholar (see Table 1). There were 23,447 total articles searchable across the journals, with 226 articles meeting the inclu- sionary criteria (i.e., included the word “assent”). Thirty-nine of these articles were sub- sequently excluded from the review based on the exclusion criteria. One hundred eighty-seven articles were left to code. Of those articles, 7 (4%) were coded as “Waived,” 124 (66%) were coded as “No Detail,” 33 (18%) were coded as “Minimal Detail,” and 28 (15%) were coded as “Detailed” (see Table 2). Five articles met the criteria for more than one category due to their utilization of different methods for dif- ferent participants. Therefore, the total count of

Figure 1 Search Process, Exclusionary Criteria, Number of Journals, and Articles Excluded with Reasons

Articles identified through data base searching

(n=23,468)

Articles screened, included the word “assent”

(n=226)

Journals Reviewed (n=20)

Journals Excluded, not searchable in Google Scholar

(n=4)

Articles Excluded, the article was inaccessible, the article

was not experimental, and the use of the word “assent” was

not related to the experimental component of the study

(n=39)

Cody Morris et al.6

articles across all of the assent categories exceeds the total number of articles included in this study by five. This slight skew is present in reported percentages and explained within the application section (i.e., “Waived”). Of the seven articles coded as “Waived,”

three described the rationale for waiving assent as being the participants’ ages (e.g., they did not require assent for children aged 12 years and younger), and four either described the participants as having insufficient language to understand the assent form and/or having been diagnosed with cognitive impairment or ASD. Importantly, five articles classified as “Waived” were also co-classified within the “No Detail” (2) and “Minimal Detail” category (3). Co- classifying these articles was necessary because different assent methods were applied across participants within the same study. All of the 124 articles coded as “No Detail”

were similar in their procedures used to obtain

assent. Each stated an approximation of “assent was obtained” and provided no further detail. The 33 articles coded as “Minimal Detail” included 14 articles that stated the procedures included written assent, and 20 articles stated procedures included verbal assent (one study stated that both written and verbal assent were obtained). Articles coded as “Detailed” described several

idiosyncratic strategies for obtaining assent. In an attempt to organize summary information about the “Detailed” strategies, we created Table 3 to depict the various components of the assent process described in the applicable studies. Each article’s assent procedures are summarized in Table 3 with an X marking corresponding components that were included in assent procedures. Nine of the studies included multiple components, which is appar- ent when more than one X appears in a single row. As nine studies are coded under multiple

Table 2

Total Articles with Assent Procedures Listed

Total Articles in Journal

Total Articles with “Assent” Excluded Waived

No Detail

Minimal Detail Detailed

Behavior Analysis in Practice 552 23 3 1 15 3 1 Journal of Applied Behavior Analysis

4,550 48 5 1 29 3 11

Journal of the Experimental Analysis of Behavior

5,540 5 2 0 2 1 0

The Psychological Record 4,440 11 1 0 5 4 1 The Analysis of Verbal Behavior 470 12 1 1 6 1 3 European Journal of Behavior Analysis

494 5 2 0 1 0 2

Journal of Behavioral Education 883 49 2 0 31 10 6 Behavioral Interventions 1,380 25 7 2 10 5 3 Perspectives on Behavior Science 124 1 1 0 0 0 0 Behavior and Social Issues 410 0 0 0 0 0 0 Experimental Analysis of Human Behavior Bulletin

104 0 0 0 0 0 0

Japanese Journal of Behavior Analysis

79 0 0 0 0 0 0

Journal of Organizational Behavior Management

826 0 0 0 0 0 0

Mexican Journal of Behavior Analysis

275 0 0 0 0 0 0

Monitor on Psychology 1,640 0 0 0 0 0 0 Education and Treatment of Children

1,680 47 15 2 25 6 1

Total 23,447 226 39 7 124 33 28

7Assent in Behavior Analytic Research

categories, the data summarizing the categories below exceed 100% if totaled. Of the 28 articles providing detailed descrip-

tions for assent, 50% described providing a written, pictorial, and/or verbal description of the study for participants. Thirty-two percent described a process that included researchers asking the participants questions, such as, “Would you like to participate in research today?” or if the participant was ready to begin working/playing. Thirty-two percent of articles

described observations of participant dissent (e.g., signs of distress, facial expressions) as well as observations of assent (e.g., voluntary partici- pation in the activities, laughing) to determine assent for participation. Eleven percent incor- porated the use of a psychomotor response, such as asking the child to fill in a smiley face (to indicate assent) or a sad face (to indicate dissent). Seven percent of studies outlined the use of a tutorial segment and/or requested the participant practice a sample of what

Table 3

Articles Categorized as “Detailed” and the Described Steps for Obtaining Assent

Provided a written, pictorial, and/or verbal description of assent provided

Described the content of the question to obtain assent

Required observations of dissent/ assent

Required a tactile response

Requested the participant

experience the procedures/

receive a tutorial

Described the use of attention to increase the likelihood of

assent

Allen et al., 2013 X Van Camp & Berth, 2018

X X

Capriotti et al., 2012 X Catania et al., 1989 X X Catania et al., 1990 X X Dillenburger & Coyle, 2019

X

Esch & Fryling, 2013 X Forzano et al., 2011 X Goodnight et al., 2019 X Gunning et al., 2018 X X Gunning et al., 2020 X X Hangen et al., 2020 X Harrison & Pyles, 2013

X

Lane & Critchfield, 1998

X X

Larson et al., 2011 X Maki et al., 2020 X Meadows & Skinner, 2005

X

Murphy et al., 2018 X Oleson & Baker, 2014 X Oswald, 1994 X X X Powell & Azrin, 1968 X Quinn et al., 2015 X Sacks & Kern, 2007 X Slaton & Hanley, 2016

X X

Stephenson & Hanley, 2010

X

Szalwinski et al., 2019 X X X Willis & Mason, 2014 X Yoo & Saunders, 2014 X

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procedures would look like before seeking assent. Finally, 7% outlined the use of provid- ing more or less attention just before seeking assent to increase the likelihood of the partici- pant assenting to participation.

Discussion

Considerations for obtaining assent from potential research participants with ASD and DDs are multifaceted. Although compliance with federal guidelines like the FPPHS (2018) is a necessary prerequisite to conducting research with human participants, the broad nature of comprehensive federal guidelines does not provide discipline-specific considerations for groups, such as behavior analysts con- ducting research with individuals with ASD and DDs. More applicable guidance for behav- ior analysts considering assent procedures can be found in the Code (BACB, 2020). The Code indicates that compliance with federal guidelines is required, but that more nuanced considerations such as self-determination and choice are also important to maintain compas- sion, dignity, and respect for groups served by behavior analysts. Thus, despite assent require- ments likely being waived for potential research participants with ASD and DDs through the federal requirements, behavior analysts must seek ways to empower the individuals they serve with self-determination and choice when possible. Obtaining assent may be one opportu- nity for behavior analysts to empower self- determination and choice, but the ability to do so is reliant on available methods. In an effort to better understand behavior-

analytic technologies available to enable more self-determination and choice through assent when conducting research with individuals with ASD and DDs, we reviewed articles published in behavior-analytic journals for content related to assent procedures. Notably, this review did not specifically target research done with indi- viduals with ASD and DDs. Instead, the review

searched behavior-analytic research broadly for any and all assent procedures available to behavior analysts. This analysis allowed us to assess the state of assent within applied behavior analysis as a whole. Although we would have preferred to analyze variables related to the demographics of participants within the reviewed studies, the inconsistent and minimal reporting of assent prevented us from taking that approach. Our search for assent procedures within

behavior-analytic articles identified only 187 articles that referred to obtaining assent from participants in experimental studies. These 187 articles came from a sample of 23,447 behavior-analytic articles available to search. Although not all 23,447 articles are research articles, the vast majority of them likely were empirical studies. Thus, it seems safe to conclude that obtaining participant assent was not a commonly-referred-to consid- eration in behavior-analytic research papers for any type of participant—individuals with ASD and DDs or otherwise. Although some might consider the number

of behavior analytic articles mentioning assent to be alarmingly low, there are multiple reasons why assent procedures may not always be reported. One reason assent procedures may not be mentioned in a published article could be that an IRB waived assent procedures according to the stipulations described in the FPPHS (2018) or other guidelines. If assent was waived for a study, the authors might not feel obligated to mention that assent was con- sidered and waived. In fact, of the articles reviewed, we found only seven articles that mentioned waived assent. Furthermore, in five of these seven articles, waived assent was men- tioned in relation to assent procedures that were used with some of the participants. For example, a study with three participants may have included assent procedures with two of the participants, but assent was waived for the third participant. Thus, it appears that

9Assent in Behavior Analytic Research

researchers tend to mention waiving assent for some participants only if they first describe pro- cedures for obtaining assent with other partici- pants in their study. A second reason that assent may not be

mentioned in published articles is that compli- ance with assent procedures may be implied or indirectly documented elsewhere. For example, many journals and/or publishers require authors to sign an attestation for compliance with ethical standards as part of the submission process. As many aspects of assent are sub- sumed under the ethical standards attestation, many authors or editors may forgo mentioning it in the manuscript to maximize the efficiency of text in the article. Finally, a third reason that assent procedures

may not have been mentioned in the reviewed articles is that some of the articles may have been retrospective or secondary studies that examined already collected data. In those cases, assent would not necessarily be applicable and would, therefore, not be reported. This review did not exclude retrospective or secondary stud- ies from the initial pool of articles searched. The primary purpose of conducting this lit-

erature review was to identify available technol- ogies for obtaining assent that could be applicable to potential research participants with ASD and DDs. However, the majority of the articles identified in this review provided little to no detail about their procedures (i.e., they were coded as “No Detail” and “Minimal Detail”). Therefore, little informa- tion could be gleaned from a majority of the reviewed studies. Although these studies did not provide enough information to guide other researchers in obtaining assent, they did at least model the importance of considering assent and mentioning it in articles. Twenty-eight articles identified in this review

did provide specific details about their process for obtaining assent. The identified procedures were fairly idiosyncratic across studies (see Table 3), making the identification of

common, specific strategies that researchers could adopt difficult to ascertain. Additionally, the level of technical detail varied across arti- cles, and many relied on written or verbal descriptions of the study procedures and/or participants following the verbal or written instructions (e.g., mark the happy face if you want to come). Considering the language diffi- culties prevalent in the ASD and DD populations, verbal or written descriptions are not likely sufficient for obtaining assent. Some strategies described in some studies

included in the review did stand out as poten- tially being useful for research participants with ASD and DDs. Specifically, some studies required the participants to experience the rele- vant procedures before seeking assent, and others watched for behaviors they correlated with assent (e.g., voluntarily participating in activities and smiling) and dissent (e.g., signs of distress and facial expressions). However, none of the reviewed strategies seemed to completely capture every component of assent in a manner that could be adaptable for individuals with ASD and DDs. As a result, we sought to con- ceptualize one possible alternative method for obtaining assent beyond those identified in the review.

Assent Through Concurrent Chains Procedures One way to conceptualize assent is a freedom

to choose whether to participate in a research session or not (i.e., participate in another activ- ity instead). Catania (1980) notes, “Whether behavior is regarded as free, controlled, or coerced, it involves choice, and choice implies the availability of alternatives. We may there- fore interpret questions about the value of free- dom as questions about preference for the availability of alternatives” (p. 98). If assent is conceptualized as a choice, then concurrent operant analyses may provide a method for evaluating assent. Specifically, concurrent

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chains schedules may serve as a useful method for evaluating assent. In a concurrent chains schedule, participants choose between two con- currently available initial links (conditions) and then access the chosen condition, which may contain specific contingencies for responding during the chosen condition. Again, Catania notes, “Concurrent chains schedules separate the preference for different conditions (in initial links) from contingencies that main- tain responding within those conditions (in terminal links)” (p. 102). Applied researchers have utilized concurrent

chains schedules to evaluate participants’ prefer- ences for treatments for their problem behavior. For example, Hanley et al. (1997) used a con- current chains schedule to evaluate client pref- erences for two different reinforcement-based treatments for their problem behavior. One treatment was a functional communication training (FCT) package, and the other was fixed-time delivery of reinforcement (NCR). After an assessment of their problem behavior, each of these treatments was implemented with the participants, and both were found to be effective in reducing their problem behavior. Therefore, the researchers evaluated the client’s preference to determine which treatment was more preferred. First, the researchers conducted training sessions, wherein participants were exposed to the contingencies they would expe- rience if they touched one of three micro- switches, each of which was a different color. Pressing the blue switch resulted in the partici- pant experiencing FCT, pressing the red switch resulted in the participant experiencing NCR, and pressing the white switch resulted in the participant experiencing an extinction-based treatment (as a control; this condition pro- duced no reinforcement and was hypothesized to be something the participants would have no motivation to select). First, the researchers physically guided the participants to touch one of the switches. Contingent upon doing so, the participant entered a therapy room and

experienced the contingencies comprising the treatment associated with that switch. The par- ticipants were guided to do this at least three times for each switch until they independently touched the switches when told to press a spe- cific switch. The order of switch instruction and the position of the switches varied ran- domly. After this, participant preferences for the different treatments were evaluated by arranging the three colored switches outside the therapy room and allowing the participant to press one of the switches (initial link). After pressing one of the switches, the participant entered the therapy room and experienced the treatment associated with the switch chosen for 2 min (terminal link). This was repeated until a pattern emerged. Using this technology, the authors were able to identify clear treatment preferences for FCT for both participants. In a subsequent study, Hanley et al. (2005) used a similar procedure to evaluate whether partici- pants preferred FCT treatment with or without the use of punishment contingencies. In all cases, the FCT package that included the pun- ishment component was more effective in reducing problem behavior and, furthermore, was preferred by both participants. In these studies, the participants were chil-

dren with ASD, DDs, and/or severe learning delays. With the exception of one participant (who was noted to have vocal-verbal behavior but also articulation problems so significant that her speech was unintelligible), the partici- pant descriptions in these studies did not include specific information about their vocal- verbal repertoires. However, the authors noted that all of the children had some listener responses, including being able to follow one- and two-step directions. All of the children had very severe problem behavior. From the fact that FCT was implemented for all of the partic- ipants, one might infer that the speaker reper- toires of these participants were significantly limited. Impressively, despite limited speaker and listener repertoires, the authors were able

11Assent in Behavior Analytic Research

to obtain preference for treatment, suggesting that an evaluation of assent, or willingness to participate in the treatment, could be obtained, even in cases where the treatments included punishment contingencies. These results sug- gest that a concurrent chains schedule could be a useful procedure for gauging assent for partic- ipation in research, even in cases where speaker and listener repertoires are limited. In 1995, a Committee on Bioethics

(American Academy of Pediatrics) issued guid- ance on what constitutes assent. Four criteria were described: (a) ensuring awareness of options, (b) providing expectations of proce- dures, (c) clinically assessing understanding of options, and (d) soliciting expression of under- standing. Although these criteria are not framed in a behavioral manner, they objectively sum- marize important attributes of assent that any model should include and could be conceptual- ized behaviorally. Further, the steps utilized in a concurrent chains schedule could be concep- tualized as exemplifying these criteria. How each step in the concurrent chains schedule maps on to these criteria is summarized in Table 4. For example, in a concurrent chains schedule, each stimulus in the initial link is

discriminative for the contingencies that will be implemented after it is selected. In the Hanley et al. (1997, 2005) studies, the different col- ored microswitches were discriminative for the treatment that would be implemented if touched. This could be conceptualized as ensuring that participants have an awareness of the options. Discriminative stimuli signal the available

choices. Providing training trials, where partici- pants are prompted to touch each discrimina- tive stimulus (in this case switches) and subsequently experience the contingencies asso- ciated with that discriminative stimulus (in this case, different treatments), provides participants with expectations of the procedures to be implemented. Randomly rotating the position of the discriminative stimuli (switches) across trials ensures that participants are not making selections randomly or based on position bias. This allows the researcher to assess the under- standing of the options. Furthermore, including a control condition that is hypothesized to be very low preference and would not likely be selected allows the researcher to ensure par- ticipants understand the options. If participants frequently select the option that has no rein- forcing value or they select it in equal propor- tion to other options, the researcher may hypothesize that the participant does not understand the options. An expression of understanding may then be evaluated by implementing the concurrent chains schedule, collecting data on the choices, and if a clear pattern emerges, then “understanding” and preference may be inferred/demonstrated. Such a strategy requires few, if any, speaker skills and minimal listener skills (e.g., the ability to follow simple one-step instructions and making a choice when told to “pick one”). Generalizing this procedure to an evaluation

of assent for research participation might occur using the following steps. The researcher could identify discriminative stimuli to signal each of the choices: (a) the conditions of the

Table 4

Mapping of Concurrent Chains Procedures to the Committee on Bioethics Recommendations

Committee on Bioethics (1995) Recommendations Concurrent Chains Procedures

Ensure awareness of options

Establish discriminative stimuli associated with choice options

Provide expectations of procedures

Prompt exposure to experimental conditions that allow interaction contingencies

Clinically assess understanding of options

Include a control option to evaluate response differentiation

Solicit expression of understanding

Implement concurrent chains procedure and assess differentiation (alternate position of initial links with each trial)

Cody Morris et al.12

experiment, (b) a typical activity, or (c) sitting alone (control). The researcher could conduct practice trials to teach the individual to touch the switches (i.e., ensure the response is in the repertoire) and subsequently experience the contingencies associated with each option (i.e., exposure trials). Next, the researcher could conduct the concurrent chains schedule to solicit an expression of understanding while rotating the order of the discriminative stimuli (i.e., switches) to clinically assess understanding of the options. If the individual reliably selects the option that produces the research condi- tions, then assent could be inferred, and affir- mative agreement would be clearly displayed. In theory, the use of the concurrent chains

schedule appears to be a useful way to concep- tualize assent for research in individuals who are not able to provide assent through tradi- tional means, such as some individuals with ASD and DDs. However, we are not aware of any research on the utility of such an arrange- ment. Much research would need to be con- ducted to evaluate the feasibility of such a procedure. Several questions would need to be answered before this strategy could be adopted. For example, one question is how feasible is it to utilize this strategy? It takes a fair amount of time to conduct a concurrent chains schedule analysis. Stimuli need to be identified, training needs to be conducted so the stimuli become discriminative for the conditions that will be implemented contingent upon touching the stimuli, individuals need exposure to the con- tingencies, and so on. For potential research participants who do not have the skills neces- sary to benefit from such a procedure, these skills would have to be taught first. The amount of time this takes could make these procedures unfeasible. A second question is how often such an assessment would need to be conducted throughout a study. If assent can be withdrawn any time and preferences are known to change, it stands to reason that the assessment must be conducted frequently. If so,

this harkens back to the question about feasibil- ity and efficiency described above. A third question is what the alternative conditions to the research procedures should be when arrang- ing a concurrent chains schedule. For example, would a demanding classroom task or a leisure activity be more socially valid? Finally, a fourth question is whether a control condition is nec- essary and what an appropriate control condi- tion would be. In summary, there are many unanswered questions that need attention to make the concurrent chains schedule a viable procedure for evaluating assent.

Summary A review of behavior-analytic research pro-

duced little guidance for assent strategies for potential research participants with ASD and DDs. This is most likely due to assent being technically waived for most research partici- pants with ASD and DDs. For researchers seek- ing to empower research participants with self- determination and choice, despite assent being waived for their potential research participants, limited options are available. Furthermore, potential research participants with ASD and DD have very idiosyncratic needs/skills which makes standardized procedures difficult to cre- ate. However, strategies such as the concurrent chains procedure require minimal prerequisite skills on the part of the potential research par- ticipants, which may make them more widely useful for potential research participants with varying/limited skills. There are many limitations to using concur-

rent chains procedures to assess assent for potential research participants. For one, arrang- ing concurrent chains schedules can be labori- ous and time-consuming. If potential research participants have the ability to communicate through verbal means, more standardized methods of obtaining assent (i.e., simply explaining the procedures and asking if the par- ticipant is willing to participate) would be much more efficient. However, traditional

13Assent in Behavior Analytic Research

means of assent are not always possible for indi- viduals with ASD and DDs. Concurrent chains procedures can be used to

maximize self-determination and choice of potential participants by enabling an evaluation of assent. However, self-determination and choice are relative concepts that would still not be absolute when using this arrangement. For example, the concurrent chains procedure often requires that the potential participant be exposed to the contingencies before they are given the option. In that situation, self-determination and choice are limited during the forced exposure in order to empower the participant to choose later. Hence, it may not be possible to enable absolute self-determination and choice when uti- lizing any of the assent procedures discussed. Ultimately, all procedures are likely imperfect and not practical or possible in every situation. However, the point here is not perfection or absolute self-determination and choice. Rather, the goal is to maximize self-determination and choice when and where possible for individuals who are not always given the opportunity to exert those concepts in their lives.

Limitations and Future Research There are multiple limitations to our litera-

ture review making it difficult to draw broad conclusions about the issue of assent in applied behavior analytic research. These limitations include our inability to obtain specific informa- tion about demographic variables, study type, and other potentially interesting information. However, the purpose of the review was to identify any and all strategies behavior analysts have used to obtain assent rather than analyze specific details about the conditions that assent are targeted. Another limitation of the literature review

was that behavior-analytic journals and/or arti- cles might not have been included in our review despite systematically searching journals listed on the ABAI and the BACB websites. It

is possible that behavior-analytic articles have been published in journals beyond those endorsed by ABAI and the BACB. The inclu- sion of other articles may have changed our findings. Future research could expand the sea- rch on the term “assent” to identify whether any additional information can be learned about assent processes. As a result of these limitations, we were

unable to provide specific, meaningful recom- mendations for guiding decisions about whether or how to obtain assent for potential research participants with ASD and DDs, as we had hoped to do. Individuals with ASD and DDs have idiosyncratic needs that require individualized procedures to obtain assent. Although the specific strategies we highlighted in this paper will not likely address every single need of such potential participants, it is our hope that the information provided here can be used as a starting place and framework for researchers seeking assent. Furthermore, we hope that this paper serves as a prompt for researchers to further consider assent proce- dures and to evaluate ways to effectively obtain assent from potential research participants with ASD and DDs. Obtaining assent from potential research par-

ticipants is a complex and understudied area in behavior analysis. Researchers interested in this topic could prioritize discovering and validating a wider range of assent procedures than what is currently available for potential participants with ASD and DDs. The expansion of procedures for obtaining or evaluating assent may come from further review and conceptualization of methods to obtain assent, surveys of current practices, and experimental analysis of possible procedures. For example, researchers interested in further literature review and conceptualization of assent strategies might consider studying prac- tices used in other fields and modifying them to fit the scope of behavior-analytic research. Alter- natively, researchers interested in conducting surveys related to assent procedures might

Cody Morris et al.14

investigate how IRBs at different institutions handle assent/waiving assent or how assent is taught in research methods courses. Finally, researchers interested in experimental research related to assent might consider comparing methods of obtaining assent across different cli- ent profiles. Another important area for future research of

assent is the extension beyond individuals with ASD and DDs. As mentioned in the introduc- tion, assent may be complicated with many populations, including youth receiving services in a juvenile delinquency program and children in foster care. Each of these populations has different nuances to consider. Researchers inter- ested in extending assent research beyond indi- viduals with ASD and DDs should consider bringing attention to other populations by writ- ing about the complexities and considerations involved in obtaining assent for research partici- pation. Survey and experimental research in that domain would also be beneficial. Finally, to aid in the endeavor of better

understanding assent, it is also critical that researchers begin to report more explicit infor- mation about their assent procedures – whether they were waived or utilized. Clearly stating if assent was waived and why will model the importance of considering assent and help iden- tify the prevalence of and reasons why assent is being waived. Reporting specific assent proce- dures used in experimental studies will also model the importance of considering assent, in addition to providing guidance for researchers seeking assent with similar populations.

Conclusion

Assent is a critical element of applied research. For behavior analysts conducting research with individuals with ASD and DDs, additional considerations for obtaining or eval- uating assent are necessary. Although assent requirements are likely frequently waived by IRBs in accordance with the federal guidelines

(i.e., the FPPHS, 2018), researchers should still consider empowering their potential research participants by providing the opportunity to give assent because it aligns with the self- determination and choice values of the field of behavior analysis and, more importantly, the ethical principles described in the Code (BACB, 2020). Gaining assent from ASD and DD populations can be challenging because individuals with ASD and DDs are often not able to provide assent through traditional means, such as spoken and written modalities. Thus, it is important for behavior analysts to further develop and refine available technolo- gies for assent. Our review of several behavior-analytic

journals provided limited guidance on potential assent procedures because it appears that researchers do not regularly describe their assent procedures or whether they obtain assent from their participants. Although there are many reasons a researcher may not report their assent practices, the lack of descriptions of assent procedures in research articles makes it difficult to identify what effective assent tech- nologies might be available to researchers. Of the procedures that are described in the behavior-analytic literature, most rely on the participant having listener and speaker skills. Further development of other strategies appears to be sorely needed. We identified some potential strategies for

obtaining assent, namely choice and concurrent chains procedures. However, such strategies have not been researched thoroughly enough to be useful to applied researchers. This is an area ripe for future research. Strategies that are developed should meet several criteria: (a) ensuring participant awareness of options, (b) providing participants with expectations of procedures, (c) clinically assessing participant understanding of options, and (d) soliciting expression of understanding. Research that leads to a meaningful assessment of potential participant assent, when participants have ASD

15Assent in Behavior Analytic Research

or DDs and don’t have the “capability” to assent using typical assent procedures, would go far to help practitioners and researchers pro- vide their potential participants with opportu- nities for self-determination and choice.

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Received January 30, 2021 Final acceptance May 16, 2021 Action Editor, Tyra Sellers

17Assent in Behavior Analytic Research